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The objective of this study is to assess the contribution of shared communication and decision-making processes in patient-centered healthcare teams to the generation of innovative conce

S T U D Y P R O T O C O L Open Access

Shared communication processes within

healthcare teams for rare diseases and their

behavior and patient satisfaction

Henrike Hannemann-Weber1*, Maura Kessel1, Karolina Budych2and Carsten Schultz1

Abstract

Background: A rare disease is a pattern of symptoms that afflicts less than five in 10,000 patients However, as about 6,000 different rare disease patterns exist, they still have significant epidemiological relevance We focus on rare diseases that affect multiple organs and thus demand that multidisciplinary healthcare professionals (HCPs) work together In this context, standardized healthcare processes and concepts are mainly lacking, and a deficit of knowledge induces uncertainty and ambiguity As such, individualized solutions for each patient are needed This necessitates an intensive level of innovative individual behavior and thus, adequate idea generation The final implementation of new healthcare concepts requires the integration of the expertise of all healthcare team

members, including that of the patients Therefore, knowledge sharing between HCPs and shared decision making between HCPs and patients are important The objective of this study is to assess the contribution of shared communication and decision-making processes in patient-centered healthcare teams to the generation of

innovative concepts and consequently to improvements in patient satisfaction

Methods: A theoretical framework covering interaction processes and explorative outcomes, and using patient satisfaction as a measure for operational performance, was developed based on healthcare management,

innovation, and social science literature This theoretical framework forms the basis for a three-phase,

mixed-method study Exploratory phase I will first involve collecting qualitative data to detect central interaction barriers within healthcare teams The results are related back to theory, and testable hypotheses will be derived Phase II then comprises the testing of hypotheses through a quantitative survey of patients and their HCPs in six different rare disease patterns For each of the six diseases, the sample should comprise an average of 30 patients with six HCP per patient-centered healthcare team Finally, in phase III, qualitative data will be generated via

semi-structured telephone interviews with patients to gain a deeper understanding of the communication processes and initiatives that generate innovative solutions

Discussion: The findings of this proposed study will help to elucidate the necessity of individualized innovative solutions for patients with rare diseases Therefore, this study will pinpoint the primary interaction and

communication processes in multidisciplinary teams, as well as the required interplay between exploratory

outcomes and operational performance Hence, this study will provide healthcare institutions and HCPs with results and information essential for elaborating and implementing individual care solutions through the establishment of appropriate interaction and communication structures and processes within patient-centered healthcare teams

* Correspondence: henrike.hannemann-weber@tu-berlin.de

1

Institute for Technology and Innovation Management, Technische

Universität Berlin, Strasse des 17 Juni 135, 10623 Berlin, Germany

Full list of author information is available at the end of the article

© 2011 Hannemann-Weber et al; licensee BioMed Central Ltd This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and

Rare diseases are defined as specific disease patterns with a

prevalence of less than five in 10,000 [1] patients This

infrequent prevalence causes a serious deficit of expert

knowledge that often induces uncertainty, ambiguity, and

unpredictability in routine care However, patients with

rare diseases frequently have a strong need for complex

and multidisciplinary treatment Expertise and knowledge

are required, but they are often located in dispersed

cen-ters of expertise, and are thus disconnected from the local

healthcare environment of patients Standardized

health-care guidelines are lacking due to the great variance of

symptoms and treatment processes within each disease

pattern Therefore, multidisciplinary healthcare teams,

diverse in education and function, are tasked with creating

new, individual, patient-centered solutions to improving

patients’ long-term healthcare situation We define this

necessary innovative behavior of healthcare providers

(HCPs) as the intensity of proactive behavior and

improvi-sation to find adequate individualized solutions for each

patient and to implement new processes, products, or

pro-cedures to enhance medical outcomes In addition to the

emerging incremental adaptations of current healthcare

processes, initiatives and new solutions for medical

pro-ducts and procedures arise that have to be transferred to

other HCPs To cope with the complexity of rare diseases,

idea generation and implementation both require the

inte-gration all team members’ expertise, including that of the

patient As such, communication processes between the

involved actors play an essential role Our study focuses

on two different communication processes, knowledge

sharing between HCPs and shared decision making

between HCPs and patients Based on two different

litera-ture streams, innovation management and health service

research, we suggest that both communication processes

will foster HCPs’ innovative behavior, which in turn

influ-ences patient satisfaction positively (see Figure 1) These

communication processes are influenced by specific

characteristics of rare diseases In particular, HCPs and patients have to deal with the high functional diversity of the team [2-4] and high environmental uncertainty that affect routine and explorative processes [5,6] In this study,

we develop a theoretical framework and derive hypotheses,

as indicated in the study framework above We also describe the study plan and discuss central contributions

of this study

In this study, we develop a theoretical framework and derive hypotheses, as indicated in the study framework above We also describe the study plan and discuss cen-tral contributions of this study

Knowledge sharing and its influence on innovative behavior and patient satisfaction

We define innovative behavior as the introduction and implementation of new ideas, processes, products, or procedures designed to significantly benefit the patient Several authors see knowledge as a critical resource of organizations, networks, or teams that provides a sus-tainable advantage for innovative performance outcomes [7-9] This assertion is applicable to knowledge-intense working contexts where information is broadly lacking -the treatment of patients with rare diseases Knowledge, defined as ‘a fluid mix of framed experience, values, contextual information, and expert insights [ ]’ [8], represents the basis for evaluating and incorporating new experiences and information to create new health-care concepts and treatments fitting patients’ needs [8] Different HCPs carry different expertise Therefore, diverse teams possess a broader range of explicit knowl-edge and a larger pool of abilities and skills, and thereby may lead to improved patient outcomes [2,10] The vari-ety of knowledge carriers underlies the importance of knowledge-sharing processes between members of healthcare teams If knowledge is not shared, cognitive resources available within a team remain idle [11] Strong relationships and interactive knowledge sharing enable the team to create new solutions [12,13] by com-bining new with existing knowledge to come up with novel ideas and concepts [14] In our study, knowledge sharing is considered to be an interactive communica-tion process between at least two HCPs It is character-ized by various communication attributes, such as the frequency and reciprocity of knowledge exchange, the multiplicity of knowledge content [15], and the quality and strength of the HCPs’ relationships [16] Referring

to healthcare teams dealing with patients with rare dis-eases, we assume that internal knowledge-sharing pro-cesses start immediately after a multidisciplinary healthcare team is assembled This builds a foundation for essential innovative healthcare activities The meta-analytic overview from van Wijk [17] supports this idea

by showing a significant overall correlation between

between HCP:

Knowledge sharing

between HCP and

patient:

Shared decision

making

Innovative behavior

Patient satisfaction

Context: Team diversity and uncertainty

Figure 1 Study framework.

knowledge sharing and innovative performance, and this

correlation underlines our assumption that within

healthcare teams, interactive knowledge-sharing

pro-cesses positively influence HCPs’ innovative behavior

In addition to the need for knowledge sharing for

explorative outcomes, operational performance also

depends on the intensity of knowledge sharing between

HCPs, particularly specific knowledge related to more

routine activities [17] Knowledge sharing can also be

seen as an essential aspect of meeting patients’ needs in

the operational treatment of daily healthcare processes

As such, we suggest that intensive information exchange

concerning the care of patients with rare diseases

signifi-cantly affects patient satisfaction by better fitting their

permanent needs

Shared decision making and its influence on innovative

behavior and patient satisfaction

Although the concept of knowledge sharing focuses

mainly on HCPs, the interaction with the patient, and in

particular the process of shared decision making (SDM),

must also be addressed SDM can be defined as an

inter-active process in which at least two participants -

physi-cian and patient - share information and equally reach an

agreement on the treatment to implement [18,19]

Despite the considerable challenges associated with

deci-sion making for rare diseases, investigations into the

shared decision-making process, its implications, and its

impact on innovative behavior in the setting of rare

dis-eases have been lacking Moreover, outside of the

health-care context, researchers have typically studied

participation effects in the organizational context,

focus-ing for example on the leadership style and its impact on

employees’ innovativeness [20] The influence of the

patient’s participation in decision making on the service

provider’s innovative behavior has received minimal

attention in the literature to date Preliminary indications

have arisen from the literature review and Delphi study

by Fleuren [21] They identified patient cooperation as a

relevant determinant of innovative behavior within

healthcare organizations Especially in the context of rare

diseases characterized by uncertainty due to insufficient

knowledge, mutual willingness to influence and to be

influenced is essential for the development of creative

ideas and their transformation into workable methods,

products, and services We argue that as the patient

becomes more involved in the decision-making process,

the solutions developed by HCPs may be re-examined

and re-evaluated [22] Hence, it enables HCPs to critically

process their own creative ideas and to pursue those that

will best meet the patients’ expectations and

require-ments We therefore state that there is solid justification

for exploring participation and particularly shared

deci-sion making as an important determinant of innovative

behavior of HCPs Additionally, through fostering a com-mon understanding of the disease between patient and HCPs, patient involvement in treatment decisions may help the HCPs to better meet the patient’s needs by pro-viding customized healthcare [23] The gap between the patient’s expectations and their perception of perfor-mance will diminish [24] Thus, shared decision making also has a positive effect on patient satisfaction

Innovative behavior and its influence on patient satisfaction

New medical products and processes require innovative behavior from HCPs This is of particular importance for patients with rare diseases, because innovative con-cepts must compensate for limited knowledge and miss-ing routines As a result, the healthcare team improves its ability to serve and help patients [25]; the patient will receive appropriate and highly suitable help, and will be more satisfied As such, we suggest that innovative behavior positively relates to overall healthcare perfor-mance and more specifically to patient satisfaction

In conclusion, based on the above-mentioned assump-tions, this study aims to test the following hypotheses concerning the impact on patient satisfaction of knowl-edge sharing and shared decision making mediated by innovative behavior of individual HCPs operating under uncertain conditions in multidisciplinary teams:

Hypothesis 1: Knowledge sharing between HCPs in patient-centered teams positively influences innovative behavior

Hypothesis 2: Knowledge sharing between HCPs in patient-centered teams has a direct positive influence on patient satisfaction

Hypothesis 3: Patient involvement in shared decision making positively influences HCPs’ innovative behavior Hypothesis 4: Patient involvement in shared decision making has a direct positive influence on patient satisfaction

Hypothesis 5: HCPs’ innovative behavior positively influences patient satisfaction

Methods

Design

The overall design is an empirical study in which a ser-ies of attributes of individuals and teams are measured

to test the developed hypotheses A three-phase, mixed-method and multi-level study will be conducted Phase I

is an exploratory study, phase II is the quantitative part

of the main study, and phase III is the qualitative part

of the main study

Participants and sample size

Through expert interviews with various physicians spe-cializing in the care of rare diseases and with

representatives of self-help organizations, we assessed a

wide range of disease patterns and finally focused the

study on six different rare diseases They were selected

by pre-defined criteria: a requirement for

multidisciplin-ary team work, regionally dispersed expertise, limited

experience, a degree of uncertainty due to an absence of

knowledge and routines, and extraordinary individual

healthcare demands We tried to choose diseases that

mainly differ in care intensity, level of suffering, patients’

age of disease outbreak (adults versus children), affected

organs, and prevalence Thus, in an iterative process, we

finally chose the following diseases to test our

theoreti-cal framework: Amyotrophic lateral sclerosis, Marfan’s

syndrome, Wilson’s disease, Epidermolysis bullosa,

Duchenne muscular dystrophy, and Neurodegeneration

with brain iron accumulation

Patients will be recruited via brochures placed in

cen-ters of expertise and specialized hospitals for rare

dis-eases as well as in non-profit self-help organizations For

each of the six diseases, the sample should comprise 30

patients Only patients and their HCPs whose

perma-nent residence is in Germany will be recruited To shed

light on shared communication processes among

health-care teams, we will address several HCPs of each

patient-centered healthcare team Patients who have

declared their participation will then be asked to return

a list indicating all members of their healthcare team

On average, we expect six HCPs per patient-centered

healthcare team, e.g., general practitioners, nurses, heath

care aides, physicians in hospitals or ambulatory

set-tings, and various therapists and social workers involved

in operational healthcare processes Out of our chosen

diseases, neurodegeneration with brain iron

accumula-tion has the smallest prevalence, with about 50 patients

in Germany To ensure comparability we will send out

50 patients’ questionnaires for all the selected diseases

and expect a response rate of 60% We anticipate that a

high number of patients will participate in our study

because they typically display a high level of personal

concern Moreover, our exploratory pre-study in phase I

indicated that both patients and HCPs were enthusiastic

to participate Therefore, we also expect a relatively high

response rate of 40% for the six HCPs per team In

total, we expect to build on data from 180 patients and

432 HCPs

Data collection

Phase I: exploratory pre-study

In an initial pre-study, we collected data via exploratory

interviews to detect central barriers teams have to cope

with in their daily work with patients suffering from

rare diseases We collected data from four

patient-cen-tered healthcare teams, including four patients and

rela-tives together with 16 HCPs such as nurses, healthcare

givers, doctors, therapists, health insurance agents, and service employees of medical device producers In addi-tion to resource restricaddi-tions, we mainly detected limita-tions in communication processes between HCPs and patients as well as between members of healthcare teams Therefore, our findings highlighted a significant need for specific intra-team processes such as extensive knowledge sharing and shared decision making within healthcare teams including patients Additionally, the interviews confirmed the relevance of individualized solutions to improving long-term healthcare and conse-quently to increasing patient satisfaction

Phase II: quantitative main study

The main study is a deductive analysis aiming to test our hypotheses mentioned above - that knowledge shar-ing and shared decision makshar-ing positively influence HCPs’ innovative behavior, which consequently leads to better patient satisfaction Questionnaires will be sent out to our above-described sample evaluating demo-graphic data, frequency, reciprocity and multiplexity of knowledge sharing, the role of shared decision making between patients and HCPs, individual innovative beha-vior, and patient satisfaction Together with the ques-tionnaire, each patient will be asked to return a list indicating their healthcare team members In a second step, we will send a questionnaire to each of the stated healthcare team members evaluating demographic data, functional diversity, environmental uncertainty, fre-quency, reciprocity and multiplexity of knowledge shar-ing, and individual innovative behavior

Phase III: qualitative main study

After receiving the questionnaires, we will conduct semi-structured telephone interviews with the patients The interviews will last approximately 20 minutes and will be designed in accordance with recommendations for qualitative research [26-28] The objective of these interviews is to gain a deeper understanding of the pro-cesses of knowledge sharing and shared decision making among healthcare team members and their initiatives to find innovative solutions By combining our qualitative and quantitative results, we aim to formulate concrete proposals on how to optimize communication and inno-vation processes for rare diseases

Measurement and analysis

All questionnaire items will be rated on a seven-point Likert scale ranging from 1 ‘strongly disagree’ to 7

‘strongly agree.’ In line with our study framework, we will examine the following four concepts: knowledge sharing, shared decision making, HCPs’ innovative beha-vior, and patient satisfaction To examine knowledge sharing within healthcare teams, every participant will

be asked to indicate how often (daily, weekly, monthly,

or less than once a month) he/she interacts with each

team member to exchange procedural knowledge (e.g.,

information about healthcare procedures and processes)

and declarative knowledge (e.g information about

diag-nosis, symptoms, or therapies) This means of measuring

knowledge sharing was adapted from Bakker et al [15]

and will result in a matrix that captures the intensity of

knowledge sharing regarding procedural and declarative

information between members of each team We will

use the nine-item Shared Decision-Making

Question-naire (SDM-Q-9) from Kriston et al [19] to assess the

use of shared decision making within healthcare teams

SDM is defined here as an interactive process in which

patients and their HCPs share information equally in

reaching an agreement on treatment Hence, the

ques-tionnaire consists of nine items each describing one step

of the SDM process A sample item is ‘My doctor

helped me understand all the information.’ Innovative

behavior will be measured with a scale combined from

two previously developed scales: the creativity scale of

Zhou and George [29] (three items, e.g.,‘I am/He/She is

a good source of creative ideas’) and the innovation

scale developed by Scott and Bruce [20] (two items, e.g.,

‘I/He/She promote(s) and champion(s) ideas to others.’)

We chose this combination of items because they

repre-sent the major stages in the individual innovative

beha-vior process (problem identification, information

searching and encoding, idea generation, and

implemen-tation) and because they are the most appropriate for

the given context of healthcare teams working on

uncer-tain tasks such as rare diseases The innovative behavior

of each HCP will be measured using a two-informant

design via self-evaluation and external evaluation

through patients To explore patient satisfaction, we will

use a patient satisfaction scale based on the Munich

Patient Satisfaction Scale (MPSS-24), which in its

origi-nal form consists of 24 items mainly addressing

socio-emotional and communicative aspects of the

patient-HCP relationship [30] For this study, we omitted six

items, e.g., ‘The doctors are being interested in my

pro-blems;’ additionally, we included an item to measure

overall satisfaction We chose the MPSS-24 because it

focuses on the HCPs’ competence The scale will be

adopted for each subgroup (doctors, physicians,

health-care givers, therapists) In addition, patients also rated

their overall level of satisfaction with healthcare on a

10-point scale ranging from 1 (least satisfied) to 10

(most satisfied) In addition, we will control for several

aspects to limit the influence of unobserved variance

We will control for functional diversity among

health-care teams by drawing on past research [2,31] that

oper-ationalizes this concept by addressing the tenure,

educational background, and functional background of

the team In line with recommendations on how to

measure diversity [32], we will measure the mentioned

variables using Blau’s index of heterogeneity, 1- ∑pi2

[33] In this formula, p represents the proportion of a team in the respective diversity category, and i is the number of different categories represented within a team Thus, an index of 0 indicates no diversity, while a higher index score indicates that more diversity exists in the measured variable among team members Addition-ally, we integrate the context of uncertainty as a second control variable, which will be measured by a three-item scale originally used by Gladys et al., e.g.,‘The intensity

of the patients’ healthcare is unpredictable’ [34] The statistical analysis will explore the relationships between the two predictor variables (knowledge sharing and shared decision making) and both the dependent vari-able of patient satisfaction and the mediating effect of HCPs’ innovative behavior by controlling for functional diversity within each team and environmental uncer-tainty The theoretical model will be tested using multi-ple regression analysis and structural equation modeling

In addition to phase II, we will evaluate the qualitative data within phase III using MAXQDA in line with recommendations for qualitative research and grounded theory [26-28]

Ethical considerations

Ethics approval for the project was received from the Research Ethics Board of Technische Universität Berlin, Institut für Psychologie und Arbeitswissenschaft (approved 08 December 2010; ethics number: SC_01_20101116)

Discussion

Patients with rare diseases regularly encounter serious deficits in HCPs’ expertise and in treatment guidelines, and this causes a high level of uncertainty and ambiguity

in routine healthcare processes In this study, we argue that the assembly of multidisciplinary healthcare teams consisting of both routine and specialized HCPs is required to generate individually tailored healthcare concepts Team diversity, i.e., the amount of multidisci-plinarity and the level of qualification within a health-care team, is considered to be a key contextual element Moreover, uncertainty and unpredictability create an inability to predict accurately what the outcomes of decisions might be [5,6] This leads to an unstable and uncontrolled situation for the patient [35,36] In line with these specific conditions, the proposed theory-based approach will shed light on interaction processes from an integrated perspective After identifying the main theoretical communication processes within healthcare teams, they will be empirically tested Our study will investigate patients’ needs via qualitative data and their satisfaction with the healthcare situation via quantitative data Moreover, HCPs’ innovative behavior

will be investigated with special attention to their

com-munication activities within teams and with the patient

This allows us to consider healthcare teams as a whole,

integrating the patients in particular Thus, healthcare

teams include the whole multidisciplinary set of HCPs

including relatives and patients Referring to our study

framework, healthcare teams with norms for shared

decision making and intensive knowledge sharing that

facilitate open communication among team members

may encourage individuals to innovate, which in turn

increases individual patient satisfaction Hence, this

study will provide unique information on the most

important factors for improving the long-term care of

patients with rare diseases through the development of

individual innovative care concepts We anticipate that

our results will significantly contribute to research by

analyzing the role of knowledge sharing and shared

decision making within patient-centered healthcare

teams, and their impact on HCPs’ innovative attempts

to better meet patient’s needs and thereby improve

patient satisfaction Supported by the qualitative results,

we aim to provide practical solutions: implementing and

subsequently institutionalizing central shared

communi-cations processes within healthcare teams including the

patient may be key in promoting patient-centered,

indi-vidualized innovative concepts for patients with rare

dis-eases Our results will provide healthcare institutions

and HCPs with essential information for elaborating and

implementing individual care solutions through the

establishment of appropriate interaction and

communi-cation structures and processes With respect to the

lim-itations of a single country study, we suggest that future

studies expand this German sample to an international

sample to generalize the results and to dissociate them

from country-specific confounding variables

Acknowledgements and Funding

This research project is funded by the German Federal Ministry of Education

and Research (BMBF) through a priority announcement, grant no.

01FG09008 The BMBF did neither participate in the design of the study nor

in the drafting of this manuscript.

Author details

1 Institute for Technology and Innovation Management, Technische

Universität Berlin, Strasse des 17 Juni 135, 10623 Berlin, Germany 2 German

Foundation for the chronically Ill, Fürth, Germany.

Authors ’ contributions

HH-W, MK, KB and CS conceived and developed the study HH-W and MK

drafted the study protocol and lead and coordinate the study under the

supervision of CS KB and CS helped to draft this study protocol HH-W, MK,

KB and CS developed the questionnaires and interview guidelines; HH-W,

MK and KB are responsible for the data collection CS prepared the ethical

approval document All authors read, and approved the final manuscript CS

is its guarantor.

Competing interests

The authors declare that they have no competing interests.

Received: 4 March 2011 Accepted: 21 April 2011 Published: 21 April 2011

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doi:10.1186/1748-5908-6-40

Cite this article as: Hannemann-Weber et al.: Shared communication

processes within healthcare teams for rare diseases and their influence

on healthcare professionals’ innovative behavior and patient

satisfaction Implementation Science 2011 6:40.

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